Aching to help Easter Seals

by Rachel Talen

Working with the National Associate Board (NAB) here at Easter Seals as a staff liaison is truly a pleasure. NAB members are so committed to the Easter Seals mission, and they’ve done so much to support us over the past year: events from races to raffles, and a bar social night, too! Today I’m pleased to introduce one NAB member, Louis Bacigalupo, with a guest blog about his fundraising efforts.

Running, swimming and biking for Easter Seals

by Louis Bacigalupo

Louis Bacigalupo

My life has been positively affected by a family member with disabilities. That’s why I’ve been a long time contributor to Easter Seals: I have a high level of appreciation for the work they do. I know firsthand how challenging it can be to support and care for a person with disabilities and how important and helpful Easter Seals services are to families. So when I was contacted by Kelly Perez (Manager of Volunteer Engagement at Easter Seals) last year about the National Associate Board (NAB), I was excited to join and see how I can help differently going forward.

Last year I ran my first Chicago Triathlon, too. It was a fun experience and I got myself into the best shape of my adult life. I felt great and met a lot of cool people while training and competing.

During discussions with other NAB members this year I learned that some of them were raising money through the marathon and Ragnar Relay events (nice work Amy and Mike). Why not raise funds for Easter Seals while improving on my personal best time at the triathlon? I didn’t break any records, believe me, but it was an accomplishment for me to do what I did!

I started race day by jumping in Lake Michigan bright and early at 6:18 a.m. and when all was said and done I beat my personal best by 6 minutes and finished in the top 25% for my age group. More importantly, I raised awareness for the Easter Seals cause and earned over $2000 for the organization.

I don’t know if I’ll ever run another Triathlon. The time commitment to train for it is pretty heavy, and with a career, young children, and a new house, it puts a strain on my summer. I will always have fond memories of my experience this year, though, and will continue to support Easter Seals and their great work.

Easter Seals and the National Associate Board are planning the Walk With Me Chicago event on October 20, 2013 and are looking for teams to participate and support the organization. Please sign up now to help the Walk With Me event and help out in any way you can. Thank you!

Rooting for Miss Iowa

by Beth Finke

Miss Iowa 2013

A few things you may not know about Nicole Kelly, the reigning Miss Iowa:

• She’s only participated in two competitions, Miss Metro (the one that qualified her for the Miss Iowa competition) and then Miss Iowa.
• Nicole is 23 years old.
• She graduated from the Johnny Carson School of Theatre and Film at the University of Nebraska-Lincoln with a degree in Directing and theatre Management.
• In Fall of 2012 she did an internship in New York City with Manhattan Theatre Club.
• She interned with the Goodman Theatre here in Chicago right after that.
• And then, earlier this year, she was hired as Child Guardian on the Tony-nominated Broadway play The Assembled Parties.
• She is a striking, slender blonde with blue eyes.

Oh. Wait. I forgot one thing. Nicole Kelly was born without a left forearm, too.

Shortly after winning the Miss Iowa contest, Nicole Kelly decided only to respond to interview requests from Iowa news outlets. Previous Miss Iowa winners only got attention from Iowa media (not from national markets), so why should she be any different? “One of the reasons I’m doing this is to prove that people with disabilities are just like everybody else, and they can accomplish things just like everybody else,” she said in a story that came out in USA Today explaining her decision to avoid national interviews for a while. “I’m going to be just like any other Miss Iowa and do the best I can to represent our great state.”

Starting in September, all Miss America contestants are required to respond to national and international media requests, so you might be seeing a lot more of Nicole Kelly this week before Sunday’s Miss America competition. My guess is that Miss Iowa will be telling a lot of reporters that her missing arm is not the most interesting thing about her. Here’s what she told that USA Today reporter who asked about her missing left hand and forearm after she won the Miss Iowa competition earlier this year:

“I had good parents,” she said. “I had good experiences growing up in Keokuk. Nobody ever made fun of me. They asked questions. They were curious. I liked that. I liked talking to people. Pretty soon people forgot about it, and they were just talking to me.”

This Sunday Nicole will have the opportunity to tell the world what she’s been saying all along: “I’m just like everybody else.”

Easter Seals is sending a card to Nicole Kelly later this week to wish her our best, and we invite you to join us and add your name to our card by tonight (Friday, September 13, 2013), so we can send your best wishes along to Miss Iowa for this Sunday’s Miss America pageant, too.

What happens when the Jumbotron moment ends?

by Col. David Sutherland

Leadership is about motivation and vision. Motivation includes follow-up and follow through. It is also about doing what’s right for the organization rather than for personal or financial gain.

ESPN ran a heartfelt feature last month showing professional sports teams surprising families with the return of a relative who had been serving overseas. I love the one where a little girl throws out the first pitch to a masked catcher, who then removes his headgear. Turns out the catcher is her dad, just home from Afghanistan, and the two share a moving reunion somewhere between the pitcher’s mound and home plate.

I love how these returns are becoming part of our sporting culture, and I believe it helps to connect the 99% of America who hasn’t served with the 1% who currently are. That’s a fantastic and much-needed thing. But could it be better? Of course.

What happens after the joyful reunion is played on the Jumbotron? How can the teams maintain their leadership and show that they care? It’s a leadership moment, an opportunity to move from management and apply motivation and direct leadership.

Let’s start with the person who brought the veteran there in the first place. That person has a huge network of support. Be a mentor. Introduce the veteran to people in an appropriate network who can help with training for a new position. Show continuous care, not just a once-in-a-lifetime moment.

I’d also like to see the sports team themselves take this a step further and actually stay connected to these returning veterans and their families. Let them use the gyms on off days to workout. Provide them with a mentor from the coaching/training staff. Each team has a community relations representative. Ask that person to periodically check in with the returning service member to see what more can be done. That one phone call could be a lifeline for a veteran and his/her family.

You can help Harvard research the early identification and diagnosis of ASD

by Patricia Wright

It is well known that early identification and engagement in effective early intervention promotes best outcomes for individuals with Autism Spectrum Disorder (ASD). Easter Seals is among the many who are working towards identifying children with ASD in need of support before entering school: our Make the First Five Count campaign provides an Ages & Stages Questionnaire® so parents and caregivers can see if a child’s developmental progress is on schedule.

Here in the United States, there is still a gap between when diagnosis of ASD can be accurately provided (age two) and when diagnosis actually occurs (about age four).

The Puzzlemouse Project at the Wall Lab at Harvard Medical School is conducting research to try and create a system that will reach families across the country and around the world, including families who do not have access to the medical infrastructure needed to diagnose developmental delays. Their end goal: to help families get the attention their child needs in a matter of days.

Easter Seals shares that goal. We want families to get the attention their child needs in a matter of days, too. You can help us accomplish this goal by participating in the Puzzlemouse Project’s research. Caregivers of children, ages 14 months to 7 years old, with OR without a diagnosis of a developmental delay, can participate from the privacy and comfort of home using any device that has access to the internet. Once you go to the Puzzlemouse Project’s website, all you have to do is:

• Answer ten questions about the child’s typical behavior, and
• Upload a two to five minute long home video of the child in a social situation (a birthday party, playing with friends, or a day at the park, that sort of thing).

Early diagnosis and intervention are so, so important. I hope you’ll take advantage of this opportunity to help the Puzzlemouse Project do what it can to decrease the age between when diagnosis is possible and when diagnosis actually occurs.

This back-to-school essential comes free of charge: Ages & Stages Questionnaires

by Rachel Talen

Eileen Howard Boone

I am pleased to introduce Eileen Howard Boone as a guest blogger today. Eileen is a member of the Easter Seals national board and SVP of Corporate Communications and Community Relations for CVS Caremark, and she’s a valued spokesperson for Easter Seals and the Make the First Five Count campaign, too.

The most important back-to-school supply? Health readiness!

By Eileen Howard Boone

As kids across the country prepare for the new school year, many families are focused on making sure their children are equipped with the necessary school supplies that will help them reach their full potential in the classroom. While books, notebooks and pencils are essential, the most important back-to-school supply is health readiness.

As part of our commitment to helping children of all abilities on their path to better health, the CVS Caremark Charitable Trust, in partnership with Easter Seals, is encouraging parents and caregivers nationwide to access the Ages & Stages Questionnaires®, an online health screening tool that enables them to easily track a child’s development through age five.

According to the National Survey of Children’s Health 2007, one in five households with children has a child with a special health care need (PDF) that could benefit from screenings and services. Yet, less than 20 percent of children under the age of five receive a developmental screening. Through Easter Seals’ Make the First Five Count®, a campaign to help ensure children are achieving their developmental milestones during the important first five years of life, we hope to help families successfully bridge this gap by providing free health screenings that are crucial to a child’s future success.

To help provide this tool to all parents and caregivers, last year, we felt it was important to fund access to The Ages & Stages Questionnaires so it would be available online and at no cost.  This year, we were proud to extend that support to make it available in Spanish.

After observing a child, parents and caregivers may take the online survey, and then download their child’s results to discuss with their pediatrician. The survey, which should be completed annually until the child reaches age five, ensures that he or she is not at risk for developmental delays or disabilities and helps indicate if the child is on track to enter kindergarten. The Ages & Stages Questionnaires also offers advice and support from Easter Seals if a child displays developmental delays.

But, why focus on the first five years of a child’s life?

The first years of learning are the most critical in a child’s development. Yet, every year more than one million children with unidentified delays and disabilities enter school with learning and health issues that may put them far behind their peers and have a lasting, negative effect on their ability to succeed. Early intervention services like the Ages & Stages Questionnaires help families identify children’s school-readiness and plan effective and appropriate steps to ensure that children of all abilities are able to reach their full potential.

Regardless of how a child develops, there are ways to help children of all abilities learn through educational play. I encourage parents to take advantage of Easter Seals’ services, access the Ages & Stages Questionnaires and incorporate the following tips for educational play into their families’ daily lives.

• Read to your kids. In young children, it nurtures an interest in language, words and communication.
• Play word games.
• Encourage children to write original stories and illustrate them with their own drawings.
• Illustrate the value of math by making connections to everyday life with “teachable math moments,” from cutting slices of pizza to getting gas for the car.
• Praise your children’s academic progress. Tell them that you are proud of their efforts. When students are confident in their abilities, they enjoy learning.

We at the CVS Caremark Charitable Trust wish families with children of all abilities a happy and healthy start to the school year!

Bye, bye internship

by Elsa Remak

Rachel and me at the Miss You Can Do It premiere in Chicago

Greetings from Bloomington, Indiana! After three amazing months as an intern at Easter Seals Headquarters in Chicago, it’s time for me to complete my senior year at Indiana University.

Trading my office for a classroom will be no easy task. While I absolutely love my school (GO HOOSIERS!), I will truly miss the Easter Seals family. I learned more about myself in the past three months than I have in my 21 years of life.

On May 20th, I entered the Willis Tower office (Sears Tower for you Chicago folk) timid and unsure. I was in a new city about to begin work for an organization that is near and dear to my family…no pressure, eh? I had already braced myself for what I thought to be the typical “intern duties”: going on countless Starbucks runs and spending endless hours licking envelopes. Note to future interns: The Devil Wears Prada is FAR from the truth.

It may sound cheesy, but as soon as I entered the office, I knew I was in the right place. I walked through the door and my eyes gravitated to a quote on the wall from Easter Seals founder Edgar Allen: “Your life and mine shall be valued not by what we take…but what we give.” These touching words set the tone for my summer. I was welcomed with smiles all over rather than an expansive list of coffee orders, and right from the first day I felt like a valuable employee.

Fast forward a few months to where I am now. Of course I left Easter Seals with professional skills that I will be able to apply to my future endeavors, but those resume-boosters pale in comparison to what I emotionally got out of the internship. I left Easter Seals with lifelong connections and a new outlook and appreciation for life.

Prior to my internship I had little knowledge about the day-to-day lives of people living with disabilities. I approached disabilities like so many others in my generation do, sympathetic yet unaware. Each day at the office became a new learning experience.

Through Miss You Can Do It I learned about the inner beauty that lies in every girl, no matter her physical ability. The Hornet’s Nest, an upcoming war documentary, taught me that we need to put our political opinions on war aside to meet the unique needs of our new veterans. Some of the men and women featured in the film are younger than me, and have already lived the lives of someone three times my age. Beyond my major projects, I loved looking through various marketing materials to learn about current and former Easter Seals representatives. Their stories inspire me to live life with a smile on my face.

I am so thankful for my experience at Easter Seals this past summer. I was lucky enough to do work that I truly enjoyed with amazing and passionate people. I learned a lot about an incredible organization, and I learned a lot about myself in the process as well.

Inspired to work harder and dream bigger

by Katy Beh Neas

Wow! Yesterday’s celebration of the 50th Anniversary of the 1963 March on Washington was pretty sensational, and I felt privileged to be able to be there. The on again off again rain couldn’t dampen my spirits — I was moved by the music, and it was truly inspirational to hear pioneers who have helped shape our country for the better tell their stories of how they came to the fight for justice and freedom for all Americans.

Julian Bond, Andrew Young, and John Lewis were all there, and Julian Bond talked about his grandparents who were slaves — something that seems truly unimaginable today. The remarks of the Reverend Bernice King (Dr. King’s daughter) were particularly passionate and eloquent. She included people with disabilities in her remarks, too. Woo-hoo! Here’s the link to her speech on YouTube.

I was over the moon to have Fred Maahs, Easter Seals national board member and chairman of the board of the American Association of People with Disabilities, as the voice for our community. Fred is an executive with Comcast and was a great spokesperson for people with disabilities. He talked about his life before and after the diving accident that caused his disability and reinforced that while we have a lot to celebrate, people with disabilities still have significant unmet needs. Too many kids aren’t getting the supports in school they need, and too many adults are unemployed.

On a personal note, I am grateful to have been very close to one of the organizers of the 1963 March, Arnold Aronson. Arnie was the founder of the Leadership Conference on Civil Rights along with Roy Wilkins and A. Phillip Randolph in 1950. LCCR has coordinated all the federal legislative campaigns for the civil rights community.

Arni’s been gone almost 15 years now, but he was with me today. Arnie often talked about being in the car with MLK on the way to the speech and that Dr. King was coy about the content of his remarks. I hope Arnie and Dr. King would take comfort in the progress that our nation has made over these past five decades. I also hope they continue to inspire us to work harder, dream bigger and remember that kindness, love and respect are essential to progress as a community and as a country.

Welcome, Missouri!

by Beth Finke

We have something big to celebrate in September: this Sunday Life Skills, an agency serving 5,000 individuals with disabilities in Missouri, will affiliate with Easter Seals. That’s right: on September 1, 2013, Life Skills officially joins all our other Easter Seals affiliates and service sites across the country to provide services to people with disabilities and special needs in their local communities.

Both Life Skills and Easter Seals were founded by parents with the goal of creating a better future for people living with disabilities, and Life Skills’ outstanding record for meeting the needs of individuals with developmental disabilities and their families throughout the state of Missouri makes this partnership a perfect fit.

Our new Missouri affiliate will continue to be known by Life Skills, but starting this Sunday, September 1, 2013, they’ll use our Easter Seals name and logo, too. Welcome to the Easter Seals family, Life Skills!

Here’s help for families who can’t afford the internet

by Rachel Talen

You may remember the post I wrote about one of our fabulous corporate sponsors, The Comcast Foundation and the grants it provides  to support assistive technology programs.

Both Easter Seals and Comcast want kids to have the tools they need to start school ready to learn, and now Comcast’s dedication to accessibility has been taken to a new level. Comcast’s new Internet Essentials program offers high-speed Internet service, a low-cost computer and access to free Internet trainings to low-income families in Comcast markets.

It’s an affordable solution that supports Easter Seals families and other families across the country — a huge help, especially now that it’s time for back-to-school preparation. This Internet Essentials program just goes to show how Comcast is working to expand digital literacy by bringing technology into every home.

Thank you, Comcast. Your Internet Essentials program empowers people with special needs and their families and helping them to achieve the best quality of life possible.

Got an eye for design? We need your expertise

by Beth Finke

My colleagues here at Easter Seals Headquarters have been pouring over artwork submitted by kids who receive support at Easter Seals centers all over the country. Only one special piece can be featured on the cover of our 2014 Children’s Art Calendar, and we want you to help choose it. You’ve gotta act fast, though: voting ends today, Friday, August 23, 2013.

Vote for your favorite piece of artwork before the end of the day today and help us reach 5,000 votes to show Emma, Addison and Alani just how much their time, talent and creativity mean to the Easter Seals family. We’ll share the winning cover art in the next Easter Seals eNewsletter, so if you are not a subscriber, be sure to sign up here to receive the September eNewsletter and find out which artwork you’ll be seeing on the cover next year.

PS: You can also reserve your own 2014 Children’s Art Calendar early by making a donation to Easter Seals after you vote. Our calendars always go quickly, so take advantage of this limited-time opportunity and order one now.